While navigating in NYC public hospitals, I met several dozen women under 40 with advanced breast cancer. The youngest I met was not yet a woman, just 16 years old with a Stage 4 breast cancer. She and her mother had made the trip from South America.
I met a number of women from other countries who came hoping to receive treatment at no cost; treatment that was not available in their home countries. There were women who were living in NYC who were part of the working poor with no health insurance as well as those receiving government assistance.
Many of the women told stories of inadequate screenings and treatment in their home countries. Women living in NYC told a different story…a doctor in a community clinic they frequented told them they were too young for breast cancer, that the lump they felt was probably a cyst, or a blocked milk duct if they were nursing a newborn. Some were told to wait 6 months and see if it shrunk or got larger.
Most of their lives these women only sought treatment when they were pregnant or in pain, using hospital emergency rooms as their primary care providers. They had little knowledge about breast cancer, early intervention screenings and treatment options. Survival issues such as not taking time off from work to see a doctor, or being unable to pay a sitter kept some women away until they were in pain. Still, others were all too willing to believe the old wives tales from friends and family about what causes a breast lump and how to cure it.
Most women in this age group believe they are too young to get breast cancer. Yet every year 1,000′s of women under 40 are diagnosed with breast cancer. Support does exist for young women with breast cancer. The Young Survival Coalition is one such organization, providing support for survivors and caregivers and working with the medical, research and legislative communities to raise awareness of the needs of this under served group.
To reach women like the ones I met with is not easy. They are often a hidden population. Many have English as a second language, if they speak English at all. They live and often work in communities where others speak their language and share their customs. They rarely venture beyond the church or neighborhood shopping areas. To reach them, literature needs to be in their language. It needs to be distributed in the churches and other areas where women gather in their community. It needs to be distributed by a young woman, preferably a survivor, who speaks their language and is sensitive to their culture. Labor intensive, yes, but necessary if we hope to get these women into treatment while treatment can still help them to have a life after breast cancer.